Down the Rabbit Hole Part 1 – The Spot Found in a Random X-ray

Hello readers. This is the first in a series about my husband’s lung cancer. The last thing I want to do is depress people, so I will sprinkle these posts with the three H’s: humor (the best medicine),hope (the secret to staying sane), and the honest truth (always the best policy).

Note: George is doing really well at this time. His whole body PET scan is clear. No tumors. The MRI of his brain showed one of the original tumors has decreased in size even more than previously, from 7.7 mm to 6.2. There is still a trace of the leptomeningeal cancer, but it’s not spreading. So we are eternally thankful for this latest good news.

“Down the rabbit hole” refers to a situation that is strange, confusing, or illogical, and often hard to escape from.

Illustration by Sir John Tenniel

The term comes from Lewis Carroll’s novel, Alice’s Adventures in Wonderland. In the story, Alice falls down a rabbit hole into a strange dreamlike world.

Watch out! I think it’s a rabbit hole.

Follow the Spots

November 7, 2013. George had been sick with congestion, a cough, and sore throat for two weeks. He finished his antibiotic and wanted our doctor to prescribe another one.

The doctor wouldn’t prescribe it unless George got a sinus x-ray first. He wasn’t happy about that. In fact, he was downright mad. That happens a lot when we don’t feel good, right?

“I feel lousy.”

He dragged himself to the doctor’s office to pick up the x-ray slip. As a last-minute thought, the doctor said, “Let’s have them do a chest x-ray, too.” George had stopped smoking about 23 years prior.

Well, well, well, the chest x-ray came back showing a spot on one of his lungs. The doctor ordered a CAT scan.

November 11, 2013 – The good news: the spot found on the chest x-ray was scartissue and nothing to worry about.

The bad news: there was another spot about a half -inch in size in the upper right quadrant that didn’t show up on the chest x-ray. He was referred to a specialist, a pulmonologist, for a PET scan.

“Have a seat. This will take a while.”

We thought George would have the PET scan the day of his appointment with the specialist. That’s how naive we were. First things first. The doctor had to examine George, review his records, and order a PET scan. Then we had to wait for the insurance to approve it.

The whole process reminds me of the old saying, “Hurry up and wait.”

Once the PET scan was done, it showed “activity” in the spot (my term).

(My friend explained a PET scan to me: “A PET scan looks for lighted areas on the scan which indicate increased heat which can indicate increased activity, i.e. inflammation or cancer or other growth.”)

The pulmonologist ordered a biopsy to be done December 5th by a surgeon at the hospital we’re signed up for under our insurance. The surgeon ordered a second CAT scan to help guide the needle when he inserted it through George’s back.

The lung collapsed during the biopsy procedure. We were told he had the beginning stages of emphysema, but we didn’t know there was an 80% chance of the lung collapsing during the biopsy.

They tried to inflate his lung one way and it didn’t work, so they switched to some suction dealie (I’m learning a lot of medical jargon) and they admitted him overnight.

He was in a lot of pain, so they gave him meds which made him groggy. There was a tube in his chest, which was sucking out the air that got trapped between the chest wall and the lung.

They said it’s a slow procedure to inflate it. If he wasn’t breathing hard enough, his lung wouldn’t inflate. It was a long, painful night.

They planned to release him the next day. Getting him home was a problem. I had to babysit two of our grand kids, so our daughter April was going to pick up her father if she could leave work early.

Just in case there was a problem, I gave him $40 to take a taxi home, but he didn’t know where to hide it.

The hospital had given him a pair of snazzy socks with grip bottoms, so I put the money inside one.

Shouldn’t the grip part of those grip socks go on the bottom of his feet?

I would have taken his laptop to him to help pass the time, but he was afraid someone would steal it, so I took his cell phone to him instead.

Darn. The laptop wouldn’t fit in his sock.

As it turned out, they kept him in the hospital a second night, so he didn’t have to take a taxi home. I was able to go pick him up that following day. The tube was still in his chest. He had to go back another day to have it removed.

Our daughter Suzee and me cheering up George Day two of his hospital stay due to his lung collapsing. Photo taken by April

We wouldn’t find out the results of the biopsy for a few days. The surgeon said the spot was only the size of a pencil eraser tip and he might have missed it when he took the tissue.

On December 11, 2013, we were told George was going to have to wait until his December 18th appointment with the pulmonologist to find out the results of the biopsy because he was out of the office that week.

We didn’t want to wait that long. The stress was terrible. The biopsy was done December 5th.

They didn’t want to schedule an appointment with one of the doctor’s associates to tell George the results, so he asked them to send the results to our family doctor. They didn’t seem too keen on that, but we had our family doctor call their office and they went ahead and faxed the results over.

The results: Inconclusive. The spot was so small, the surgeon wasn’t able to get enough tissue, so they would have to repeat the biopsy, and there was an 80% chance the lung would collapse again.

However, the biopsy did haveone cell they were able to determine was abnormal.

Another PET scan was done not too long after the biopsy, and the report said another spot showed up. This new spot was outside the lung, near his collar bone. They scheduled another biopsy.

Not a pleasant rabbit hole.

January 9, 2014 – I went to the hospital with George for the biopsy, and we sat there almost an hour. The receptionist told us they were waiting for the ‘new orders’ to arrive. We had no idea what she was talking about.

Once they called George in, he came out a half hour later and said the surgeon didn’t want to perform a biopsy because the reports that he looked at had inconsistencies.

The doctor said he thought the collar bone spot was the same spot as the one on the lung. He did an ultrasound of George’s neck and collar bone, and it didn’t show anything. The surgeon thought it might be a shadow of that spot, didn’t feel there was a spot outside the lung, and didn’t see any point in going forth with the procedure.

See Spot. See Spot’s shadow.

George talked to the pulmonologist’s nurse that afternoon, and she told him the doctor would discuss everything with him after the breathing test scheduled on Janary 22.

When George saw the pulmonologist, another PET scan was ordered because the report from the last one was messed up.

Feeling claustrophobic in this rabbit hole. Illustration by Sir John Tenniel.

Every time George had a PET scan, he was injected with radioactive dye and was advised he shouldn’t be near our grandchildren until the following day, plus no physical contact with other people for five or six hours.

Don’t get too close. I’m radioactive.

February 27, 2014 – George finally got an appointment with the pulmonologist to get the results of the PET scan he had had earlier in February.

As it turned out, what they thought was a new spot outside the lung near his collar bone was not a new spot but was the same spot in his upper right lung.

I had a hunch.

That surgeon made the right decision in not going forth with the biopsy near the collar bone. Thank you, wise doctor.

The PET scan indicated the spot in the lung did attract radioactive dye, which meant there was activity, but the good news was the spot hadn’t grown or changed. The pulmonologist said they would check it in three months.

The bad news: They found a new spot in his lower left lung and it also showed activity from the dye. The report said it was a small spot, about the same size as the spot on his right lung.

The pulmonologist wanted George to have a biopsy Monday or Tuesday. He said there was no emphysema in that area of his left lung and the spot would be easy to get to, so his lung shouldn’t collapse. They would have to go between his ribs, so the ribs might be sore, but that should be the only problem.

Surprise! Prior to that biopsy being performed, it was discovered that the records from the latest PET scan had errors. The report had the right and left lungs mixed up.

Say what? The report got the lungs mixed up? I’m having a hard time processing that.

This is what I wrote in my email to family and friends: “They messed up that first PET scan so bad, I wonder if they went to clown college and are posing as an x-ray/imaging facility. Getting the info wrong as to the spot being outside the right lung, and getting the right and left lungs mixed up in some parts of the report is ridiculous.”

“The doctor told George they would do the next PET scan at the hospital since the imaging facility messed up, but then George found out the hospital we were signed up for under our insurance plan doesn’t do PET scans, so he had to go back to that same imaging place. We don’t know whether to believe anything they report.”

My next notes are dated June 19, 2014. This was in an email I sent in a group message to family and friends:

“Good news this afternoon. The pulmonologist told George the spot on his lung hasn’t changed and didn’t show any activity. George thinks it’s scar tissue. In six months they’ll do a CT scan. So the comedy of errors has come to a conclusion, for now.

“The doctor did tell George the other alternative is to cut it out, do surgery, and George told him he doesn’t want surgery, especially considering the spot is in a hard to reach area, surrounded by a lot of blood vessels.”

Flash forward a few years:

July 21, 2016 – Email to friends: “George had a CT scan on his lung yesterday to see if the spot has changed. He just got a call from our regular doctor saying that the spot is bigger and also irregular in shape. So here we go again.”

9 Responses to Down the Rabbit Hole Part 1 – The Spot Found in a Random X-ray

Crazy all you’ve been through just to get an accurate diagnosis! I have never dealt with anything like this, but chances are we all will sooner or later. Thanks for sharing, and best wishes for good news!

What a great idea, Lynnie, my darling, to write about this in depth. It does double duty: informing friends and well wishers about the entire story and also, importantly, discharging some of your own stress. Writing is a form of therapy. It’ll help you sort through everything that has happened as you do these posts.
Having only watched on from afar, I had no idea of all the mishaps and misdeeds going on in the background. To think you had to put up with errors on top of all you were going through? Wow. Mind boggling.
Yet, you still shone through. I love the pics and your indefatigable humour! 😀

Thanks so much, Yvette. I know where to go when I need an awesome cheerleader! I agree writing is a form of therapy. Getting all of this down is a good thing, and I hope it helps others who have to deal with similar issues.